Summary of IiME Response:
It would be easy to write something fatuous
and disingenuous such as 'we believe the NICE guidelines represent an
opportunity to drive forward the improvement of services for those with ME'.
Such a view would be a sell-out to people
with ME and their families.
The reasons why the NICE Draft Guidelines
were almost universally condemned was due to the poor quality of analysis
and their lacking in ability to serve the needs and hopes of people with ME
and their families. Without drastic change to the draft guidelines the NICE
guidelines would have been irrelevant and, to quote Des Turner (Chair of the
parliamentary APPG for ME), "unfit for purpose".
Reaction to the NICE
guidelines can still be summed up as continued dismay that
NICE have chosen to highlight, yet again, Cognitive Behavioural Therapy (CBT)
and Graded Exercise (GET) as the most effective forms of management (aka
treatment) for ME. The emphasis still seems to be on these
dangerous and unhelpful psychiatric paradigms
- paradigms referred to and recommended as
therapies and as treatments for ME despite ME patients and groups stating
they are ineffective or harmful.
The inclusion of as wide a
possible base of chronic fatigue states in the draft guidelines seems still
to be prevalent and continues to do disservice to pwme.
Essential biomedical research
which distinctly shows the biological nature of ME is still ignored
The credibility of NICE is
again questioned by patient groups.
Please add you comments and
thoughts to the NICE guidelines by sending comments to us -
click here.
